Dax's Saga - birth to home to PICU and home again

Posted Jan 26, 2007 10:24am
Okay, sorry for delaying the update. We came home Wednesday night and settled in. The girls were so happy to have everyone at home. We worked with Mason in the hospital and at home on washing her hands so she wouldn't get her little brother sick again. The girls washed up and then patted and loved on Dax for a bit.
He really sounded pretty awful that first night. I stayed in the living room on the couch with him that evening. I just stared at him all night and caught about 2 hours of sleep total. He didn't do well at all and by the time morning came I was scared out of my mind that he was dehydrated again. He threw up 2 out of 4 feedings during the night and was extremely fussy. At one point Thursday morning I was talking to my friend Mari on the phone and I just started crying. I told her how scared I was and that he didn't look as good as he had in the hospital blah blah blah. I could hear the monitor sounds from the hospital in my head all night and just felt like I was going crazy not having the monitors there to reassure me. Apparently I worried her quite a bit b/c she tracked my mom down and told her to check on me. We ended up taking Dax back to the doctor at 3:30 yesterday afternoon b/c he was coughing SO hard that he continued to gag himself and throw up. The doctor increased his breathing treatment meds and gave me some ways to check for hydration and oxygen/circulatory function.
Just FYI for all parents of itty-bitties out there:
We all know to push on the baby's hand and feet to see how quickly the color comes back (should take on or less than 2 seconds). This will indicate potential problems with circulation AND dehydration since the body pulls O2 and blood to the organs when it's not well. She also said to look under his tongue for nice, clear, thin spit bubbles...if the spit is thicker and more like foam (that's what he had when he was in the ER) then that indicates that things are heading in a bad direction. Also, of course, check for wet diapers at least 1 every 6 hours. She told me that a teaspoon of Pedialyte at a time will keep him hydrated if he continues to gag and throw up. We set up the humidifier and I have been taking him into the bathroom every couple of hours and running HOT water to create steam to help break up the mucus in his chest.
Today Dax is doing fairly well. His evening went better than last night but was still rough. I was able to get a few hours sleep and I only stared at him half the night. He's still crying a lot which is making him pretty gassy. He has NO voice and sounds extremely pathetic when he cries or coughs. I'm hoping things will get better each day. I have kept my hospital bag packed just in case but hope that I can unpack it soon.
I want to say thank you to everyone for the prayers and support. Thank you to my friends at Alvin Primary for the gift card. It came in the mail yesterday. Thank you to everyone who came and/or called the house and hospital. Thank you for the balloons and stuffed animals too!!
I also want to encourage you to give to your local Ronald McDonald House or give your spare change at McDonald's to this charity. They fed us, provided a bed, bath/shower, and comfortable place to wash our clothes and relax while we were at the hospital. The facility that we used is actually housed in the hospital but there is also one on Holcombe Blvd in Houston that is for more long term needs. If you want to give and are at Tx Children's the House is located in the Abercrombie Bldg on the 4th floor. I plan on taking food every Tuesday when Mason's there for therapy...cereal, granola bars, warm meals are always welcome. This place is wonderful and needs to be supported by the community since it is a FREE service to the families of patients at TCH.

Posted Jan 24, 2007 1:25pm
WE'RE GOING HOME!! I'm heading to the Milk Bank right now to pick up the milk that I pumped and we're outta here after that!! Dax looks so much better than he did this time last week. It's hard to believe that at this time last Wednesday they rushed my little guy back to the ER screaming "He's not breathing. He's not breathing!" Bless this hospital and it's staff for saving my little man and getting him well. Please pray for the other kids here. Dax's roommate in PICU is still there and not doing as well as he did. I'm taking her balloons now before we leave.

Posted Jan 23, 2007 2:08pm
Okay, so last night went much smoother: no fever, no rapid heart rate, and he maintained his oxygen levels much better. The resident dr. came in this morning and weaned Dax off of oxygen over a 20 minute period around 11am. Now we're in the 24 hour test period. Dax has to maintain his O2 level above 90% saturation through today and tonight (dips below 90% are allowed during crying spells, breastfeeding, diaper changes as long as they're short). If he maintains it tonight then he'll probably get released tomorrow. Our pediatrician said that most kids need to be put back on oxygen that first night. If that happens then the 24 hour test starts over again and he'll have to stay another night. She said she didn't want me to get too discouraged if they had to turn on the oxygen again tonight...and she said she really expects him to need another night in the hospital but hopes that he'll prove her wrong!
Mason stayed up here with Corey until pretty late last night (about 8pm) so I could get some time with her - it was wonderful. I miss my s so much. Ashton told my mom that she didn't want to go to gymnastics last night and so they came to the hospital around 7 and left at 9pm...so I was able to get alone time with each of them. Ashton's been such a trooper through all of this - she's had a rough year between Mason's hospital stay in August/Sept for her tumor, Dax's birth, and now Dax's hospital stay...I'm amazed that she wants to come to TCH for visits. Mason is pretty indifferent...she's getting time with Daddy and thank God for school to keep her on a schedule!
Thank u for the prayers!

Posted Jan 22, 2007 1:31pm
Well, we didn't get a room in Infant Care. Dax is on the Neurology floor b/c they had beds open. He did really well once we got in the room but had bit of a rough night. He threw up when they gave him his oral antibiotic - they took him off the IV antibiotics. He also spiked a small fever this morning but it went down once he got some meds. He is still receiving oxygen through the nasal cannula and won't be eligible for consideration to be released from the hospital until he's off of oxygen and steadies his heartrate for 24 hours. Hopefully that'll happen tomorrow or Wednesday but...it's not up to me.When he's sleeping his heart rate is about 150-160 but when he's awake it's over 170 and has been maintaining pretty steadily at 190+ beats per minute (even when he appears calm). The floor doctor is trying to figure out what that's all about.
Mason had her semi-annual check up with the Meyer Center for Developmental Pediatrics in the Down Syndrome Clinic this morning. Poor Corey was running around like crazy this morning having to get the girls ready, take Ashton to school and Mason to Texas Children's. It'll probably be a relief for him when he goes back to work - at least there the problems don't revolve around trying to reason with toddlers and clean out runny noses. I took Mason to the Clinical Care Center for her check up while Corey stayed with Dax and then we switched when it was time for Dax to eat. Corey got stuck taking Mason to get her lab work done. He said Mason through a fit when they were taking her blood to run labs. They are checking her growth hormone levels, thyroid, and some other things...trying to figure out if there's a reason she's SO extremely tiny (even when compared to other DS kids).
Mom is picking up Ashton this afternoon and taking her to gymnastics so her schedule isn't interrupted. Corey will run the night shift again with the girls at home. I won't get to see my Ashton today at all. That's going to be rough but I know Corey and Mom will give her plenty of hugs/kisses for me.

Posted Jan 21, 2007 11:03am
Dax did very good last night. He slept off and on and ate regularly. We were able to get a room at Ronald McDonald House at the last minute (after 10pm) so that was a nice surprise. The doctor said that he was just about ready to transfer out of ICU. Depending on how crowded the hospital is, he will either be sent to the Infant Care Nursery or to a floor room. I'm hoping for Infant Care b/c it's geared specifically to babies and not as generic of care as being on a floor. Basically, he'll go wherever the space is available though so it's out of our hands. I am posting a new picture of Dax for you to see how far he's come. Thanks for the support and prayers!

Posted Jan 20, 2007 8:13pm
Dax has done so wonderful today. The swelling in his face has gone away completely and he's no longer retaining fluids (off of his IV). They extubated (removed breathing tube) him at noon and he's breathing on his own with a nasal cannula (the funny little nose plug thingy) for oxygen support. He was given another chest x-ray post-extubation and lungs looked better. The dr allowed him to breastfeed and he did great. Originally they told me he'd have to take a bottle and show that he could suck, swallow, and breathe well enough before they even considered allowing him to breastfeed but...he exceeded expectations! Now I don't have to run upstairs every 2 hours to pump at the Milk Bank (Mom keeps calling it the "Dairy") and that will be much easier on me.
Ashton stayed with me at the hospital today. We went to the Children's Museum and to buy a "special big sister" present at Target - she picked out the LARGE Tow Mater truck that talks. She's just been so wonderful through all of this that I gave her the run of the toy department and that's all she wanted.
Mason stayed with Grandmother and Granddaddy Shuman today so she wouldn't wreak havoc on the hospital or Corey. She was happier than happy when he dropped her off this morning at their house. I hope she didn't completely destroy their house (or mental status) with her two year antics...she's becoming quite the toot lately. The fact that she's walking better makes her a handful too.
It's looking like Dax will be transferred to a regular room sometime tomorrow around noonish. I'll post info when I can.

Posted Jan 19, 2007 11:04am
Dax woke up for about an hour this morning while I was napping, of course! Mom said he turned and looked at her and made a mad face (squinted his eyes and lowered his brow). By the time mom called to wake me and I got to the bedside he was asleep again...little toot. They have weaned him down to 16 breaths per minute on the respirator and he's averaging about 60 per minute so he's doing a lot on his own. The hope is to wean him more and more down to 0 per minute by respirator and have him on a nasal canula tomorrow. Once he's been extubated and they are happy with his progress he has to remain in ICU for another 24 hours. They think that'll be Sunday at the earliest b4 he's ready to be considered for the Patient Care room rather than ICU. So if all goes well we're looking at Wednesday at the earliest to come home...assuming there are no complications with his extubation.

Posted Jan 18, 2007 4:58pm
I just spoke with the Attending ICU doc and she said Dax's Lumbar Puncture went well. She feels that it's not Meningitis just b/c he's doing so well. They are going to start giving him breastmilk in his IV soon - 24cc (little under 1 ounce) per hour. We don't have any real numerical/lab results to report yet though. My cell phone is dead and mom's isn't working in most parts of the hospital...or cannot be turned on due to monitoring equipment in ICU. If friends/family want to contact us then just call Texas Children's Hospital and ask for PICU room #7 - Dax Taylor. If they can't get us then you can leave a message with the PICU waiting room receptionist. Mom's phone will accept text messages even when the signal is low and my phone is charging in the car while Corey picks up the girls - should be able to view texts and retrieve voice mail in an hour or so.
Mason is still snotty but in good spirits.

Posted Jan 18, 2007 12:10pm
More info. They've weaned Dax's Dopamine (to lower blood pressure) in half, taken out his catheter (God that looks painful!), Versed turned off (should start becoming more alert), Lukbar puncture/Spinal Tap has been ordered to rule out Meningitis. He's basically breathing on his own but still intubated...he's still intubated with the machine supplying 25 breaths per minute but he's taking extra breathes (about 7-19 extra breaths per minute)on his own. One dr said he thought the infection was viral causing Dax to not be able to breath efficiently which made the brochili in his lungs collapse - looking like pneumonia but actually being a little different. If it is indeed viral then there will, more than likely, not be a culture that identifies the course of the virus and we may not ever know what truly caused all of this. Sounds like the Taylor kids are good at stumping the doctors here! He will have at least 24-36 more hours in ICU. I'll post more when I get it.

Posted Jan 18, 2007 11:02am
Lots of news to report and not much of it is good unfortunately. I'll lead off with the good news...Mason is really improving with her walking and is actually trying to stand up from a seated position on her own!!! It's cute to watch. She gets in a bear crawl position and then raises up to stand, usually for about 2-3 seconds then falls on her butt. She's still REALLY congested which leads us to the bad news...Dax is sick and it appears that he caught Mason's sniffles and then progressed. He has pneumonia - both lungs are wet and the right is significantly sicker than the left. The doctors think he has sepsis (blood infection) but do not know if the cause is viral or bacterial. They are treating him as if he has the worst case scenario of Meningitis just in case. He's too weak to tolerate a spinal tap to see if that's what it is. He was on 80% oxygen last night and has been weaned to 50%. He's intubated and on IV drip along with Dopamine, Versed, Antibiotics, and some other pain killer. They give him Zantac and Tylenol PRN. He's been fever free for a while and never got above 101.5 which is good. His face is VERY swollen from the IV fluids and that along with the NG tube, ventilater, etc makes him look pretty pathetic.
FYI - he was healthy as a horse Friday/Saturday, got the sniffles Sunday, seemed a little worse for wear Monday. I took him to the dr Tuesday b/c he was ly in his chest and pretty congested. He cleared up with a breathing trtmt in the office so they sent us home with some medication suggestions thinking it was a cold. Wednesday morning I took the s to daycare and Dax was VERY lethargic...wouldn't nurse Tues/Wed for more than 1 minute and was totally limp. When I got home from dropping off the s his color was off and he was pasty, wouldn't eat. I took him out of the carseat and he was totally limp in my arms - I laid him flat on the couch to watch his chest and it wasn't moving, lips were purple and hands/feet cold. I honestly thought he was leaving me then he took a big gasp of air. I threw him in his carseat - half diapered and dressed and took off to Houston. They admitted him immediately b/c he stopped breathing in triage. He's stable now and looking better. I'll report when I have more information. Please pray for my babies!!

Posted Jan 14, 2007 1:40pm
Well we're enjoying the long weekend and watching football today. Mason was EXTREMELY congested and sick yesterday. I put her down for a nap at 1:3ish and we woke her up to change her dirty diaper at 9pm - she was running a 102.2 fever and crackling in her chest. We gave her some Little Colds with fever reducer and gave her a breathing treatment to see if that helped before we went into a full blown panic. She seemed much better after that...ate some food and drank some ice water and went back to bed until 8am this morning. She is doing great today!
Dax and Ashton are fine. Dax is a little congested and kept me up most of last night but is good today. I think the weather is just causing some sinus issues. We're planning on laying low the next 2 days due to the bad weather that's due to come through so I'm not sure yet if I'll be taking Mason to TCH for therapy Tuesday or not.

Posted Jan 11, 2007 11:41am
Sorry for not posting in a month but...we've been adjusting to 3 kids...
First things first, MASON WALKED FOR THE FIRST TIME THIS TUESDAY! She was at therapy at TCH and took 4 steps!!!! She did it at home that night and all last night - she takes 4-5 steps at the most and loves to show off her new skill! She says "I walk" as she walks too.
Everyone is doing well and happy with the new addition to the family! Mason was indifferent to the baby at first but now she loves to "pet" Dax's head and bounce him in the bouncy seat. She calls him "baby" and is mesmerized by the whole concept of him breast feeding. She lovingly rubbed Pringles crumbs in his hair the other day and gives him sloppy kisses too.
Our Christmas was great, we ate steak and bacon-wrapped shrimp instead of traditional foods - Mason loved the shrimp but Ashton ate chicken nuggets, of course. The girls got tons of toys and clothes and Mason really seemed to enjoy opening presents this year. They started back to daycare on the 3rd and I think both are enjoying being with their friends. Mason is doing well in her class and will, no doubt, give her teachers a hard time as she becomes a better walker.
Mason had her weight check Tuesday and is 17 pounds 10 ounces...they weighed Dax for me too and he was 12 pounds 4.4 ounces - he'll be passing her up sooner, in size, than I expected! CRAZY how that works.

Posted Dec 7, 2006 8:25pm
So Mason got to spend time with her baby brother tonight. She didn't really know what to think of him. When he cried, she stuck out her bottom lip and pouted (sympathy pouts). She said "baby" a LOT every time he was in her line of vision and that was really cute. It'll be interesting to see how things go tomorrow when he comes home.
Mason and Ashton have Snow Day at their school tomorrow. My mom went and bought them thermal underwear for under their clothes. Mason will be especially cold since she'll be sitting on it and not walking on it like the other kids. I hate that I'll miss it but I know Corey will take some great pictures.

Posted Dec 6, 2006 6:21pm
He's here. Dax Ryan Taylor born at 5:04pm on December 6, 2006. He weighs 8 pounds .5 ounce and is 20 3/4 inches long. His big sisters are walking down the hall to meet him right now.